Thank you for your very kind words, I am new to this. Sorry to hear your granddaughter is having problems to Suzy6.
It has been a very traumatic time for us all, I had no problems with pregnancy or delivery and it wasn't until she was 4 hours old they realised that there was a problem. She was a term baby but we now know that her lungs are similar to that of a 28 week gestation.
Flibberti We have a healthy 3 year old boy which is very difficult and I constantly feel torn. We spent 3 weeks at GOSH, but back at our local hospital now. She has many desaturations episodes due to pulmonary hypertension and no 2 days are the same. She is on maximum medication for the PH and hoping that this will be controlled until new lung tissue will grow. Also hoping that the new lung tissue will develop normally. After 4 months we are still no closer to knowing if we will ever get our baby home.
If we do get her home it is likey that she will need long term NIPPV and oxygen. We just take each day at a time and live in hope. Xx